You and your son are in my thoughts and prayers! I do hope you find the answers that you need, so you both can get the right treatment.

Sorry I don't know anything about EDS or the other, but I thought, I would wish you the best.

Blessings Rhonda

Oh dear, I understand how upsetting this news is. I'll add an extra prayer for both of you.

Cherry

Sometimes we feel like we are Alice and we have slipped down the rabbit hole. Nothing seems to make sense or seem to have any certainty. I am so glad you came here and posted your news so we can share in your frustration. That is what for, to support one another.

Many of us have gone through similar history's in terms of disgnosis. It took seven years for the doctors to diagnose me. Those were ling years of constant doctor visits and tests after test. They always had 2/3 of the puzzle but they were seekIng the last 1/3 to make the diagnosis. Finally, we estabished all the pieces and I was diagnosed. But, it was not an easy road,

My advice is to hang in there, be the best patient self-advocate you can be. Come here often and share, we will be delighted to see you. Hang in there my friend. And I will keep you and your son in my thoughts and prayers. Hugs, Cathy

I am so sorry ... that sounds like an awful lot to handle right now.

You love your child so dearly that of course you are worried... I know its easier said than done ( REALLY IS- I know) but **try** not to worry too much until ALL the tests are back and a diagnosis and prognosis have been made. Just KNOWING what you are dealing with is half the battle! Your mind might go places and then you just end up worrying unnecessarily; about something that might not even present itself.

As it sits right now ... about the only thing you *can do* ... is spend your precious energy and focus on staying strong for your boy. ( I am not saying that you don't do that already of course.) Again... I really know how hard it is NOT to worry- its just NOT- in the "MOMS handbook" so to speak. Even if you are trembling inside - he needs to look at you like everything is in control and will be just fine. YAY for moms!


Very best wishes...

I'm so sorry Scarlett. Its bad enough for just you but to have your child involved too, I sure is terrifying!! My thoughts are w/ you.

It took my Hubby 5 yrs to get a dx and we still sometimes doubt that got it right. Its a difficult road, particularly w/ a rare disease. Hubby's is so rare it really doesn't even have a name, just a "set of symtoms". For lack of anything better, they call it Tubular Aggregate Myopathy.

Oh sweetie, I am so sorry you are going through this and that your son is too. My hopes are that a different dx might have better treatments and more relief than you have now.

You are both in my thoughts and prayers.
Hugs, Barbara

Us moms would do anything, take any illness or pain from our kids...but we can only deal with our own illnesses and let our kids know how much we love them and support them...we can't take their pain. I would if I could .I know how it feels to be a mom. Waiting is so hard but know I'll pray for you both. I can say....alot of things I worried about as a mom never came to pass.
Hang in there.

I am so sorry for all your pain that you are going through not only do you have to worry about your son but you still got to figure out if you have the same thing as if he is only guessing you should get a second opinion on yourself especially if you were prior diagnosed with something else.

I dont know what EDS is so I cant help that much but I know what pain is and stress and having it effect your child brings it to a different level.

It's so hard to deal with your own illness and at the same time worry about your child's... so often your child's pain hurts you more than your own.

I sure feel for you. I hope things get better soon....

I guess the hardest thing about this is my son's reaction to it all. He got upset when the doctor want to use our family for rescearch sometime in the future. He doesnt want to be rat in a cage. He is like i dont want kids because they will have this, he asked me if i knew if i had this syndrome would I have still have him. How do u tell your kid that even tho they are happy that you have them that you wish they didnt have to go thur this,he is a teenager so anything i say is taken negatively.

Having raised 3 boys to adulthood, I remember how brutal teens can be. I always blamed it on testosterone. The good news i, they do come out on the other side...eventually.

Praying for you,
Cherry

sorry for all you're going through yourself and with your son also. maybe if you tell him how he could be saving others from having to go this it would appeal to his compassion. you're both in my prayers.

To those that dont know what EDS is. http://www.youtube.com/watch?v=PunQu-bId1M

Oh Honey, I just watched the video. How hard this must be!!!!

Behcet's Syndrome runs in my family. My mother and brother both had it. So far, the rest of do not, although I do have some of the sx's my Mom had.

big hugs for you xx